Comments on: Half Time http://updates.clltopics.org/1085-half-time Dedicated to the Fight Against Chronic Lymphocytic Leukemia Tue, 07 Feb 2012 20:15:01 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Cristina Savannah http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1151 Cristina Savannah Sat, 18 Jul 2009 19:43:30 +0000 http://updates.clltopics.org/?p=1085#comment-1151 Dear Chaya: What can I say other than echo the many "thank you's", and extend my gratitude to Radha...I am sorry I did not take the survey. I am so busy with making a living I sometimes fall behind on my readings. Joys of being self employed... I live in the US but get treatment in Brazil. I am fortunate that my hematologist-oncologist respects my intellect and up-to-dateness (thanks to Chaya!) and is always willing to discuss and modify treatments. Although I pay consults out of pocket, I have at least 1 hour with him at a time, so I plan my visits carefully; I take written documents as well as my summaries and list of questions and suggestions. I am a dilligent practioner of botanical/herbal supplementation, which he is -surprisingly- also interested in. I want to especially agree with Nancy H-- take this time with your mother as a semi-vacation and write less, email less. I'm sure those who are in urgent need of help will let you know. The rest of us can wait until you return for our usual dose and pace of knowledge and expertise, CLL-wise! Kindly, Cristina in Savannah my email: crispiva@aol.com diagnosed 1998 Dear Chaya:
What can I say other than echo the many “thank you’s”, and extend my gratitude to Radha…I am sorry I did not take the survey. I am so busy with making a living I sometimes fall behind on my readings. Joys of being self employed…
I live in the US but get treatment in Brazil. I am fortunate that my hematologist-oncologist respects my intellect and up-to-dateness (thanks to Chaya!) and is always willing to discuss and modify treatments. Although I pay consults out of pocket, I have at least 1 hour with him at a time, so I plan my visits carefully; I take written documents as well as my summaries and list of questions and suggestions. I am a dilligent practioner of botanical/herbal supplementation, which he is -surprisingly- also interested in.
I want to especially agree with Nancy H– take this time with your mother as a semi-vacation and write less, email less. I’m sure those who are in urgent need of help will let you know. The rest of us can wait until you return for our usual dose and pace of knowledge and expertise, CLL-wise!

Kindly,
Cristina in Savannah
my email: crispiva@aol.com
diagnosed 1998

]]> By: Nancy H http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1059 Nancy H Sun, 12 Jul 2009 14:57:16 +0000 http://updates.clltopics.org/?p=1085#comment-1059 Chaya, You have done so much for all of us. Being newly diagnosed in February, finding your site was the best thing that happened for me. Because of the time you spent with me via email reading lab reports, explaining tests, etc., I was able to intelligently request additional tests from my oncologist that she didn't feel were necessary. I even impressed myself when I was able to explain the tests to her! You have been that "voice in the wilderness" for all of us, and I hope in your darker days we provide the same for you. Enjoy your time in India. Take some time off - Send fewer emails, do less research. We will be fine, really. But we will look forward to your return in whatever capacity you choose to continue in. With great admiration, Nancy Hammill, Georgia Chaya,
You have done so much for all of us. Being newly diagnosed in February, finding your site was the best thing that happened for me. Because of the time you spent with me via email reading lab reports, explaining tests, etc., I was able to intelligently request additional tests from my oncologist that she didn’t feel were necessary. I even impressed myself when I was able to explain the tests to her! You have been that “voice in the wilderness” for all of us, and I hope in your darker days we provide the same for you. Enjoy your time in India. Take some time off – Send fewer emails, do less research. We will be fine, really. But we will look forward to your return in whatever capacity you choose to continue in. With great admiration, Nancy Hammill, Georgia

]]> By: Susie http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1058 Susie Sat, 11 Jul 2009 23:30:29 +0000 http://updates.clltopics.org/?p=1085#comment-1058 Chaya, My husband was first diagnosed in 2003 and needed to start treatment later that same year. He was part of a late phase clinical trial of FCR at MD Anderson that put him in complete remission for 4 years. He's now undergoing treatment with Treanda. How did I not know about your site until recently???!!!! A friend with CLL had just told me about you and I am so grateful for the information you provide - and, in terms that I can understand! Thank you so much for the wonderful work you do - what an obvious blessing you are to so many people! Sincerely, Susie Chaya,
My husband was first diagnosed in 2003 and needed to start treatment later that same year. He was part of a late phase clinical trial of FCR at MD Anderson that put him in complete remission for 4 years. He’s now undergoing treatment with Treanda. How did I not know about your site until recently???!!!! A friend with CLL had just told me about you and I am so grateful for the information you provide – and, in terms that I can understand! Thank you so much for the wonderful work you do – what an obvious blessing you are to so many people!
Sincerely,
Susie

]]> By: Treeplanter http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1057 Treeplanter Fri, 10 Jul 2009 11:40:47 +0000 http://updates.clltopics.org/?p=1085#comment-1057 Chaya, As a 7 year Cll veteran, and in my second month of FCR treatment, I must say that in the last few months since I have discovered your site I have learned more than in the previous 6 years of my disease. I was also helped by your sponsorship of the Mayo Green Clinical Trial since I was involved in phase I of that trial. Your site is also partially responsible for me deciding on my FCR treatment. So you have had a direct impact on my life and for that I want to express my profound earnest appreciation. Thank you Chaya, God bless your time with your mother. Mark Chaya,
As a 7 year Cll veteran, and in my second month of FCR treatment, I must say that in the last few months since I have discovered your site I have learned more than in the previous 6 years of my disease.
I was also helped by your sponsorship of the Mayo Green Clinical Trial since I was involved in phase I of that trial.
Your site is also partially responsible for me deciding on my FCR treatment.
So you have had a direct impact on my life and for that I want to express my profound earnest appreciation.
Thank you Chaya,
God bless your time with your mother.
Mark

]]> By: mjw http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1056 mjw Thu, 09 Jul 2009 00:50:45 +0000 http://updates.clltopics.org/?p=1085#comment-1056 Chaya, Have a good trip. Kick-back and take a well deserved rest. Thanks for everything, Jim Chaya,

Have a good trip. Kick-back and take a well deserved rest.

Thanks for everything,
Jim

]]> By: bluffparkbob http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1050 bluffparkbob Sat, 04 Jul 2009 17:20:33 +0000 http://updates.clltopics.org/?p=1085#comment-1050 Chaya, Thank you and your daughter for providing those of us without medical training the means to understand more about the disease that afflicts us. Thank you also for your advocacy in this field. It must be very difficult, even with your mental capacity, to be an advocate. There are so many competing interests in the medical field that a state of contention is heightened. PC's spirit is alive in what you and your daughter do. Godspeed! Chaya,

Thank you and your daughter for providing those of us without medical training the means to understand more about the disease that afflicts us. Thank you also for your advocacy in this field. It must be very difficult, even with your mental capacity, to be an advocate. There are so many competing interests in the medical field that a state of contention is heightened. PC’s spirit is alive in what you and your daughter do. Godspeed!

]]> By: DawnL http://updates.clltopics.org/1085-half-time/comment-page-1#comment-1048 DawnL Fri, 03 Jul 2009 12:18:24 +0000 http://updates.clltopics.org/?p=1085#comment-1048 Chaya, Congratulations on not only an extraordinary half year, but the years of education and advocacy that you have provided. You are THE top source for solid, researched information. As someone else said, I trust your information and your thinking. It doesn't mean I don't do my own and raise my own questions, but I so appreciate solid thinking. What you do is SO helpful to all of us out here either with CLL or who love someone with CLL. I am so glad you are continuing and that your daughter has stepped up to help you with this. I and so many others truly appreciate it. Thank you, thank you, thank you-both! I'm sure PC is smiling and so very proud of you both! Dawn Lipthrott Winter Park, FL Chaya, Congratulations on not only an extraordinary half year, but the years of education and advocacy that you have provided. You are THE top source for solid, researched information. As someone else said, I trust your information and your thinking. It doesn’t mean I don’t do my own and raise my own questions, but I so appreciate solid thinking. What you do is SO helpful to all of us out here either with CLL or who love someone with CLL. I am so glad you are continuing and that your daughter has stepped up to help you with this. I and so many others truly appreciate it.
Thank you, thank you, thank you-both! I’m sure PC is smiling and so very proud of you both!

Dawn Lipthrott
Winter Park, FL

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